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08
Apr

Visible Signs of Invisible Illnesses

Posted by Posted on in EirBlog
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Close up eye in black and whiteThose of us affected by what are frequently referred to as 'Invisible Illnesses' - chronic fatigue syndrome (ME/CFS), fibromyalgia (FMS), multiple chemical sensitivity (MCS) etc - are constantly frustrated by the fact that we feel lousy, yet appear perfectly healthy to the casual observer i.e. our friends and relatives.

Perhaps even more frustrating is that to the eye of the conventionally-trained doctor we also show no signs of illness, leading many to assume it's all in our heads and to send us off to the shrink. Which is of course unproductive, and often counter-productive, given that these illnesses may often be invisible, yet are nevertheless as real and legitimate as physical conditions as the likes of diabetes and arthritis. The medical literature is now full of decades worth of research documenting immunological, endocrine, and neurological abnormalities that overwhelmingly makes this case for us.

 

These illnesses may be invisible to the Average Joe on the street and even to most doctors but the signs are there if people knew what they were looking for. Some of these telltale signs include:

Pale or 'Washed Out' Complextion (The Corpse)
We invisible illness sufferers invariably look a bit closer to your average corpse than most people, especially on a particularly bad day or after some form of exertion. The reasons for this are many and varied but include poor oxygenation of the blood and difficulties getting sufficient blood to the head and face. Problems with the hypothalamus and hormonal pathways that regulate blood pressure account for some of this and ME/CFS patients have actually been shown to have less blood than healthy individuals. No wonder we look pale!

Dark Circles Under the Eyes (The Brawler)
If I spot someone who constantly has what look like minor "black eyes" then I know they are likely to be suffering from an invisible illness. The reasons for the circles are unclear to me from a scientific perspective, but common anecdotal reports suggest they are the result of liver toxicity or allergies (or both), which seems to fit with my own profile. My mother and sister also suffer from invisible illnesses and also sport black eyes so that when we are together we look like we have had one almighty family bust up!

Dizziness (The Drunk)
Whether it be someone with ME/CFS stumbling around just after standing up due to lack of blood flow to the brain (POTS, NMH, Orthostatic Intolerance) or an MCS sufferer looking unsteady on their feet after suffering a bad reaction to a chemical trigger - we invisible illness sufferers can often look like we've had one too many alcoholic beverages!

Lack of a Smile (The Grump)
This one is a bit left field but I have an unusually strong memory of a fleeting incident in high school when I was aged 14 (after having suffered from ME/CFS for 2-3 years). As I was walking down a corridor on a bright summer's afternoon a girl I knew quite well said something along the lines of "cheer up" or "give me a smile". At the time I was exhausted, was aching all over, and had a touch of nausea, so I politely attempted a smile but was angrily thinking "you try feeling as crappy as this and smiling!" Of course, had I been healthy I no doubt would have been smiling on such a nice day - they are rare here in Northern England so would usually bring a smile even to Mr Grumpy's face!

Forgetting Words or Names (The Amnesiac)
I don't know about the rest of you invisible illness sufferers but something I find infuriating about these illnesses is my frequent inability to remember even the simplest of words or the name of someone to whom I was introduced literally a minute earlier. I can be mid-sentence when talking to someone a draw a complete blank when searching my brain for a word that is a common part of my vocabulary. To the other person I must appear like a humanoid robot that has crashed and needs rebooting! I have yet to forget the word "the"...but I've been close.

Of course taken alone there could be any number of reasons why someone would exhibit these five signs. If someone displays them all chronically without other explanation though they may well be suffering from an "invisible" illness. So keep an eye out for us. We are the walking dead who have reached the depressed stage of drunkeness...and can't remember the bar fight we just had!


Now enough of my ramblings...as always, I would love to leave yours. Please post your thoughts and experiences below...

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  • Middlesbrough, UK

    Hi Linz! Nice to see my fantastic sister checking in on her big brother ;)
    Glad you liked my article and those are some really great suggestions - it looks like I'll need to do a re-write to include them!
    For the benefit of other readers, both Lindsay and I developed M.E. / Chronic Fatigue Syndrome in our early to mid-teens. While we share the majority of symptoms our illnesses have also taken slightly different paths with me being more allergy prone and chemically sensitive and Lindsay having subsequently developed POTS (hence the swaying she describes). We are the only siblings in our family and our mother also developed ME/CFS at the same time we did (early 1990s) after living with IBS symptoms her whole life. We could speculate about initial cause...but I've gone way off topic now!
    Thanks again for popping by sis (you should do it more often with your great contribution!) - looking forward to seeing you and my beautiful niece on Friday :)

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  • Guest - Lindsay Mold

    Great post bro :) I find it strange when people say, you look really well! And I'm thinking, I look half dead!
    Another one for me would be slurring my words from exhaustion or talking really fast from adrenaline.
    Also shaking.
    Being freezing when everyone else is hot or hot when others are cold!
    Staring into space or blinking lots.
    And on out wedding video you can see me swaying forwards and backwards when I'm stood still at the front of church!
    Sorry I got a bit carried away!

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  • You can still pull off some good moves on the dancefloor with the slow and gingerly approach tori ;)

    Thanks Airy, I'm glad you liked my list. I'm sue I could have come up with more bt I have a tendency to waffle to try to keep my blogs short enough that readers will make it to the end!

    I like the way you described feeling like a zombie - that's exactly how it feels to me and I'm sure many others will relate. The problem is that our brains can't sort the 'signal' from the 'noise' so when we're in a busy place trying to focus on what one person is saying we're just bombarded by all the other noise around us...no wonder we get exhausted so quickly...

    Comment last edited on about 3 years ago by Maff
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  • Wow Maff,

    Great list.

    I so relate to all of these. I also sometimes forget things that I've known for years like passwords or a phone number when I'm really struggling.

    I sometimes can't comprehend when someone is talking to me. It's like all the words go past me and don't get in my head. I'll have trouble speaking at all when I'm getting exposed and it's like my whole thought process has gone on hold. I can't even think clearly enough to remove myself from the situation. It's like being a zombie.

    Comment last edited on about 3 years ago by Maff
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  • Hi, sorry for not replying to this message sooner. I have been busy working on the technical side of the site. I am so pleased you like this blog post and honoured that you considered using it for your event. I am guessing you have already had it now so I hope it went very well. We all appreciate you doing something like this to raise awareness about our illnesses, great job!
    P.S. I hope the treats on offer at your friend's place weren't too much of a temptation ;)

    Comment last edited on about 3 years ago by Maff
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  • Maff, I love this piece, may I share it? I'm having a reception/fund-raiser/awareness raiser at my friend's granola/chocolate/wine & beer place (yes, my best friend has all these temptations in one cozy establishment, she is so cruel to me, www.nuttystephs.com) I'll be printing and posting educational materials to share. Unless you object, yours shall be included.

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